Your DNA could help make new drugs. But should you share it?

SAN FRANCISCO – If you've ever spit into a DNA collection tube – and consented to have your sample donated to science – your data could be used by a pharmaceutical company to develop new drugs. And that disclosure is worrying some consumers who were unaware that their DNA data would be shared that way.

On Tuesday, 23andMe, Ancestry.com and other companies addressed those concerns by pledging to disclose when they hand over that sensitive information to other companies or law enforcement.

Under the new guidelines, 23andMe, Ancestry, Helix, MyHeritage and Habit say they will obtain consent from consumers before sharing DNA data with businesses and other third parties, and they will disclose to the public each year requests from law enforcement to access DNA data.

But critics warn that, with rapid advances in data collection and crunching, consumers aren't able to fully grasp the privacy and security risks they are running when sharing their DNA.

The industry pledge comes three months after investigators used a DNA service to track down a man police believe to be the Golden State Killer, who allegedly raped and killed dozens of women in California in the 1970s and 1980s.

Investigators identified the man by uploading a DNA sample from a crime scene to GEDmatch, a crowdsourced DNA database.

Last week, 23andMe announced a new partnership with pharmaceutical giant GlaxoSmithKline, one of the world's largest pharmaceutical companies. GSK is investing $300 million in 23andMe. The London-based drug and vaccine manufacturer will have access to 23andMe’s database of its customers' aggregated genetic information.

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GlaxoSmithKline has made a $300 million investment in DNA testing company 23andMe. The four-year deal aims to find faster and less expensive drugs and treatment options.
Time

According to 23andMe, genetic data can significantly improve understanding of diseases, which could help a company like GSK design and develop more targeted drugs – or drugs that concentrate on a particular part of the body – to treat those diseases by looking for patterns in genetic information.

Working together could also help the companies recruit more patients for clinical trials. Studies have shown that drug-targeting programs that use genetic information are twice as likely to succeed, a 23andMe spokesperson told USA TODAY.

Only data from customers who opt in for research when they sign up for 23andMe will be studied. Of the company's 5 million customers, 80 percent have agreed to donate their genetic data for research, 23andMe said in a press release.

The collection of data for each customer is "de-identified," so it can't be traced back to the individual, according to the company.

Michelle De Mooy, director of the Privacy & Data Project at the Center for Democracy & Technology, isn't convinced consumer genetic companies' new guidelines will protect consumers' privacy. And she's concerned about the heavy reliance on "de-identification and aggregation."

Even if the data is "aggregated or de-identified, it’s impossible to fully anonymize such intrinsically personal data like DNA," she said.

For some, donating genetic material to science is like marking "yes" at the DMV when asked to be an organ donor: Why not donate genetic material to develop new drugs?

23andMe sends out free DNA kits to people whose diseases might be genetic and whose sample could help with research. The company made two of them available to USA TODAY.

Claudia Revilla, 53, of Peoria, Illinois, received a kit after matching with the company through the Michael J. Fox Foundation’s “trial finder,” a search tool that helps Parkinson’s patients find clinical trials to participate in.

“I did it because I’m a supporter of research and it’s the only way to find a cure to my disease and many, many other diseases,” Revilla said.

Movement disorder specialists told Tony Garrett, 40, of Evansville, Indiana that they’re confident Parkinson’s was passed on to him through genetics. He donates his DNA to research because he wants to find a cure for the disease so that his 14-year-old daughter doesn’t have to worry about it.

But for Drew Olanoff,38, ofPhiladelphia, having his raw genetic information used for pharmaceutical research is more than he signed up for.

Olanoff submitted his saliva sample to 23andMe in 2009. From the DNA analysis, he learned that he probably has brown eyes (he does), that he's likely to not have dimples (he does) and he learned that he might be prone to certain diseases. He decided the offering was a "shtick."

"You take the spit test and it gives you a couple little, funny things about whether you're going to go bald or not," he said. "I didn't have a higher chance than most, and I'm ridiculously bald."

After getting his results, he says he didn't hear much from 23andMe until 2017 when he was asked to complete a lifestyle survey. Some of his genetic markers were flagged because they related to research the company was doing. He declined to do the survey, but he realized the company was actually taking action with people's genetic data.

When he read last week that 23andMe was sharing its DNA database with a pharmaceutical giant, he started to wonder what that tube of saliva might actually be worth.

"If my data is so valuable that a partnership with Glaxo is going to help create new medication, then what the hell have you been doing for me, other than telling me my eyes were maybe brown?" Olanoff said.

Sharing customers’ genetic information for this type of research is nothing new for 23andMe.

In the past, 23andMe has partnered with Alnylam Pharmaceuticals Inc., Biogen, Genentech, Pfizer and P&G Beauty, among other academic and non-profit organizations. And it's a potentially far more lucrative business opportunity than selling DNA kits.

23andMe stresses that customers are free to opt out of the research option at any time or delete their data.

De Mooy wonders how many 23andMe customers like Olanoff might second-guess their decision to share their data now that the company is partnering with big pharma.

"How many people understood that agreeing to share their data for 'medical research' would include sharing with a giant pharmaceutical company to improve 23andMe.com’s market position?" De Mooy asked. "And how might they feel about companies profiting so handsomely off of data that individuals had to pay to share?"

Olanoff, who was diagnosed with Hodgkin lymphoma around the same time he took 23andMe's spit test, says he's all for finding new medications to treat diseases. But, when a DNA company starts partnering with big pharma, he doesn't want to go along for that ride.

Olanoff closed his account with 23andMe and asked to have his data deleted. He says he never opted in to donate his data for research in the first place.

"If the world's a great place and everyone has great intentions, of course I'd offer any assistance to make medications to keep people healthy," Olanoff said. "But at the same time, I don't know if that's what I signed up for."